Our Team

Diane joined PKD Charity in May 2026 as Scotland Engagement Officer, part of an 18-month project reaching hospitals across Scotland to ensure no one with PKD manages their journey alone.

She has extensive experience in the voluntary sector, connecting NHS and community services. Most recently, she worked with the National Childbirth Trust, supporting new parents on postnatal wards and linking maternity services with community support.

Diane is passionate about the impact of peer support and ensuring people know where and how to find it.

Outside work, she gardens, walks her dog, and volunteers with the Breastfeeding Network, community groups and the National Breastfeeding Helpline.

Jane, who brings over 30 years of leadership experience working with some of the world’s leading brands, has been our Communications and Events Manager since 2019.

Along with her sister, she inherited PKD from her dad, who sadly passed away when she was 17. Since then, she's run the gamut of all things PKD, including brain aneurysm surgery twice and a kidney transplant. She previously wrote about her experiences of living with PKD in a weekly column in The Times.

Jane leverages her commercial background and lived experience with PKD to enhance awareness and education about the disease through marketing campaigns, advocacy, and events.

She considers her greatest assets to be resilience, a sense of humour, her son and an ancient cat called Jimmy! 

Mandy joined PKD Charity in July 2026 as our Health & Science Information Manager. In her role, she translates research into clear, accessible information to help people understand the latest evidence about PKD.

Mandy has a background in evaluation and research across the public, voluntary and commercial sectors, including as a public health researcher within Norwich Medical School at the University of East Anglia. During this time, she communicated research findings to a wide range of audiences. Before moving into research, Mandy trained in design and worked freelance designing leaflets and websites.

She is passionate about helping people understand what research actually means and why it matters.

In her spare time Mandy enjoys camping and occasionally canoeing with her Jack Russel Terrier 'Mouse', as well as sewing and dancing. She is attempting to learn Bridge!

Rachel joined the PKD team in April 2024 as Fundraising Manager. With nearly 10 years of experience working in the charity sector, both locally and nationally, Rachel is here to support everyone who wants to raise money for the PKD Charity.

“One of my favourite things about being a fundraiser is speaking to the incredible people who go to such great lengths to raise money for something they believe in. From running a marathon with a challenging condition to doing skydives despite being scared of heights, it never ceases to amaze me how incredible people are. Being able to go on the journey with them is a great privilege.”

If you have an idea on how you would like to support our charity and help those affected by PKD, Rachel would love to hear from you.

Sarah joined the team in August 2026 as our Patient & Public Involvement Manager (PPIE). Although Sarah doesn’t have PKD herself, her daughter does, giving her a personal connection to the condition and a strong commitment to ensuring the patient voice is heard in research.

In her role, Sarah works with patients, the public and researchers to ensure PKD research is patient-centred, encourage two-way engagement and give key groups a meaningful voice. She is passionate about raising awareness of PKD research and helping to improve outcomes for patients.

Sarah brings several years’ experience leading support services for patients and families within a national charity, alongside a background in safeguarding and family support.

Based in North Somerset, Sarah enjoys beach walks with her dog Nala, spending time with her three grown-up children, caring for her houseplants and getting stuck into a good crochet project!

Susan joined us in March 2019 as the Support Services Manager. She coordinates a programme of personalised, non-medical support services for individuals and families affected by PKD. These include online PKD forums, nationwide telephone peer support, topic-based webinars, and meetups.

Susan has personal experience with PKD, having seen its effects as a wife, mother, and kidney donor.

Over seven years ago, Susan discovered the closed UK PKD support Facebook group, which she started to promote and make more active.

It has since grown significantly, and each day we welcome new members.